Hey Mr. Gopher!

I live in a row house that abuts neighbors on either side. It is smack dab in the middle of San Francisco with blocks and blocks of similar houses surrounding it. You would think, then, that I wouldn't have so many wildlife posts.

No we don't see deer or elk or moose 'round these parts. We have city wildlife. We have had more than our share of raccoon problems and last year Steve trapped a skunk. Now it's gophers.

You should know that our backyard is very small and only half of it is grass - or WAS grass. There's not much sun out her in the avenues and we have to replace the postage stamp sized lawn every five years or so. We are holding off on that for a while though because the gophers will just wreck it.






I think my husband is turning into Bill Murray from Caddyshack. He has tried traps and bait and shaking his fist in an angry way.  He doesn't want to use poison because he just wants them to leave, not necessarily to kill them. Besides the chemicals in the poison is not good for the ground and potentially poses a danger to the dog. So we need something else.  What can he get that is OK for the environment but will still rid us of the gophers?  Hmmm

I was folding laundry the other night and talking to Maggie, not really paying attention to Steve tinkering with something across the room. A box had arrived earlier and he was having fun digging through it. As the thing took shape I had to ask. What the hell is that?

It's a Windmill Mole Chaser, of course! He was delighted. This was an excellent idea to deal with his gophers. And it was green! As the windmill turns it generates a noise that bothers the gophers, theoretically sending them scurrying away to a neighbor's yard to dig.

He put it all together and installed it that very evening. So now I have an elevator AND a windmill in my back yard.

 If you look closely at the second picture, you can see the gopher mound next to the bottom of the windmill.  Steve fears the mound is actually bigger than it was before he installed it. The gophers are inviting their friends over to check out the new windmill. They are using the energy it generates to watch tv and play video games in their warren of tunnels beneath our lawn.

I have a feeling it's going to power the tiny fireworks show they will have for the 4th of July tomorrow night.

Oh, I shouldn't mention fireworks, that will probably be next,

Have a nice 4th of July Holiday tomorrow. Maggie is excited because Eddie and Grace are coming! She hasn't seen either brother in over six months, so this will make her very happy.

Speech

The following is the video of Steve's talk at The Memorial Service for Ambassador Chris Stevens. It's about 12 minutes long. I am posting this more for me than for anyone else but feel free to watch it if you are interested. He really did a wonderful job.

Beautiful memorial

The service for Ambassador Stevens was lovely. His siblings told stories only siblings would know and set a very sweet tone for the event. That definitely made it easier for Steve. He did a great job with his talk.

We were in the front row along the side, which was great. I took pictures up close and personal.

But I didn't have the vantage point to get the majesty of City Hall. My Niece Colleen Toomey was in the back and took the first one and my brother in law, Pete Degolia, who was also a fraternity brother of the Ambassador, took the second one from the balcony. It was such a beautiful setting and perfectly fitting for Chris.

 

I was extremely proud of Steve. My son Tim was next to me and said I was completely frozen during Steve's speech but then started asking him inane questions while the Libyan Ambassador to the United States was talking. I think I was relieved that Steve had done so well and could finally relax a bit. Of course Tim was actually trying to LISTEN to the Ambassador, so that wasn't good. 

Maggie stayed home and held down the fort. 

.

Goodbye to a Friend

Today is the Memorial Service for our friend Ambassador Chris Stevens. It is open to the public and I'm sure there will be thousands of people there.  The service takes place at 4:30 this afternoon in the Rotunda of San Francisco City Hall, which is a perfect place for this ceremony. It is a gorgeous building both formal and open at the same time, very much like Chris.

I know there will be at least four speakers and one of them is my husband Steve. He has been working on his speech for days, trying to get it short enough to fit into the allotted time. It is difficult to capture the essence of a 35 year friendship in a five minute speech. Steve is extremely honored to be asked by Chris' family to speak, but he is understandably nervous about making it through the speech in one piece.

I know WHAT Steve will say, I just don't know HOW he will do it. Forget the number of people present, including various dignitaries, that's nothing;  it's the emotion. Despite all the international consequences and the unfortunate attempts at politicizing this tragic event, for us it's personal.  Steve lost a very dear friend in the most horrific manner and he is extremely sad. Talking about it is very difficult for him.

Chris Stevens was my friend too, if only through my connection to Steve.  He was a wonderful, wonderful man who was thoughtful and kind, friendly and easy going, brilliant and down to earth. He came here for dinner whenever he was in the Bay Area and we always spent hours eating, drinking and talking - catching up on the months that had passed since our last dinner.

I've read so many things about Chris since the attack on the Consulate in Benghazi 36 days ago. All of what I read was positive and absolutely none of it surprised me. Of all the quips and stories and memories shared, one thing really stands out. A woman who knew him (and I don't remember the connection now) said, "whenever we spoke, about 90% of the conversation was about me."

I nodded as I read that because it was true for me too. Chris would  ask about Maggie and how the school system worked, marveled at her ability to use her communication device and her ability to overcome her medical challenges. He'd ask about how it was to manage her care and whether I missed practicing law. He asked about the boys and their lives. He asked about Steve's work and friends we had in common. There was reminiscing and laughing at the same old jokes just as all of us do with old friends.

We would hear about his family, last year of his sister's wedding and his brother's sweet little girls. We spoke of the law and law school though it was ancient history for all of us. We would talk politics in a very general way, never anything revealing in any way, but I never felt that he was hiding anything either. He would tell us about his current post, but mostly about the way they lived, never anything about the danger or the diplomacy itself.  I never really realized that until after he died because it was done so effortlessly. He was a natural diplomat and when you finished an evening with Chris, you felt like all was right in the world, He made us feel good about ourselves.

I knew more cities in the Middle East than most people because Chris had lived in nearly all of them. (I wait for a "capitals of the Middle East" category on Jeopardy.)  Chis loved the Middle East and loved the people. His stories were about cab drivers and people in cafes, not Presidents and politicians.

Of course we knew his work was dangerous - or at least that it took place in a dangerous part of the world, but that was never really discussed. It was just understood. We were naive and happy to remain so. I would always tell him to be careful because I knew the possibilities, but I never in a million years really believed anything would happen to him. It just couldn't.

But it did.

And now he's gone and we have to say a formal goodbye today, which will be a difficult thing to do. I am so proud that my husband is able to get up and tell the world about his friend Chris Stevens. Because there is much to tell. And much to miss.

Steve and Chris 1980                                           Steve, me and Chris, 1990

                                               Chris, Austin and Steve 1991(ish)

                                                        Chris and Steve 2011

Supporting communication

Maggie communicates with her Dynavox Maestro, a communication device that she operates using a two switch system. The two switches work sort of like a computer mouse. She moves through the screen with one switch and when she gets where she wants she uses the other switch to select. It's quite amazing to watch her, she can fly through the pages when she really gets going.

Maggie's abilities on the Dynavox are the result of years of hard work by numerous therapists and teachers. Professionals recognized her intellect and abilities early and started the building blocks long before I understood where it was all heading. Maggie is smart and motivated to communicate, and she had excellent instruction and support. All of that is necessary.

In addition we need the practical pieces of the puzzle or she cannot use the device. In order for Maggie to work her magic, she needs the dynavox itself to be charged and in good working order, the tray with the two switches on it so she can navigate through the pages and the pole which attaches to the chair and mounts to the dynavox.  . With all the pieces she can take her dynavox anywhere and have her say. It should look like this:

When she arrived home from school on Friday she did not have the pole. Arrrgh. We were looking at an entire weekend of little or no communication which is very frustrating for her and by extension, for all of us. I will say, though, that of the three needed components, forgetting the pole is the easiest to work around. Without the device, forget it. Without the tray, she can't maneuver around the device, but we can and did MacGyver something for the pole.

We put Maggie at the dining room table and put the dynavox there. It's not perfect because the talker cannot come with her, but ti's better than nothing. We have to prop up the dynavox so she can see it. The design of the dynavox is frustratingly flawed, though, as it does not stand up by itself. (The "stand" is part of the case, but you can't use the case if there is a mount on the device for a wheelchair - it's like they forgot the users are sitting in wheelchairs). First I balanced the dynavox against a pillow. Not perfect. Not terribly steady, but serviceable. Of course the angle" wasn't right and she couldn't really see what she was doing. Maggie depends mostly on sound because of her vision, but she does look at the screen and it was bugging her that she couldn't see it right..

Steve came home and messed with it and when I looked the dynavox was sitting perfectly upright and steady. Maggie's face looked like she wasn't buying it.

Thank GOD for Giant Wine bottles! I believe that is called a jeroboam and holds (or held) the equivalent of four bottles of wine. And one dynavox.

Better, but she was still stuck at the dining room table. She couldn't use her talker in the bedroom or in the front room or anywhere else.


Steve disappeared into the basement - his workshop, his sanctuary. He can build just about anything and is at work on Maggie's Halloween get up now. After a while I asked what he was doing and he said  I'm making a new pole for Maggie. I wondered what it would be. The possibilities were endless. Steve saves every thing in that shop - every scrap of wood, old toy wheels, even broomsticks, because they make good dowels. Forget the dowels, it turns out broomsticks also make excellent poles to hold a dynavox.  He made it the right size to slip into the mount on the side of the wheelchair and used a screw to hand the dynavox from the broomstick. Maggie could now communicate on the move - but we had to move very slowly because it was held up by only one screw and it is an expensive thing to drop. (We didn't drop it).

Steve (visible in the background wearing his Giants hat) feels justified in his broomstick hoarding now. However, one broomstick to the rescue every 26+ years does not justify the pile we have down there. I admire his ingenuity, but it is my duty to keep up the nagging.

Maggie might have something else to say about that, though.

The Triple Occupancy Club

Today I turn this site over to my husband Steve and his wonderful tribute to his friend Ambassador Chris Stevens

http://www.rememberingchrisstevens.com/post/32058116035/the-triple-occupancy-club

Drawing of the Triple Occupancy Club done By Chris Stevens in 1980  Chris Stevens and Steve McDonald UC Berkeley 1980 and (below) in our living room in 2011

   

Looking Back

My sister in law sent me an envelope full of pictures the other day. These were pictures she brought up for Maggie's birthday party and displayed on the table. There are several, all of which are good, but this one just melted my heart.

It's from 1998. Tim (age 8) is carrying Maggie (age 4) out to the dance floor at my niece's wedding. I love The proud look on Tim's face. I also love that Steve is letting Tim do it, but standing at the ready to support Maggie's head . I wonder if they danced like that.

This is Kelly's wedding in Helena, Montana in which Maggie was the flower girl. I've written about that before in Maggie World: Big Sky Invasion. Seems like yesterday, but Kelly and James are approaching their 12th anniversary and has three lovely daughters, all of whom are older than Maggie is in this picture.

Steve looks a lot younger than he does now, which is interesting because I haven't aged a bit.

Tempus fugit.

Steve's thank you

Steve made a short and lovely speech at Maggie's party. Many people in attendance have mentioned it since then and others want to know what he said. Fortunately, my sister in law had the video camera going so I can share it. These words apply to everyone in Maggie's Village, whether or not you were at her birthday party.  

(I won't know for sure if this worked until after I publish it, so fingers crossed!)

Salute to Laundry

You cannot imagine the amount of laundry Maggie generates. There is at least one load a day, sometimes up to three. This is of course in addition to the normal amount of household laundry.  I have to stay on top of it or it swallows us. Generally I start a load every morning while we wait for Maggie's bus and then do another when the bus comes back.

A couple of days last week I didn't do that and things started to pile up. The pile gets so large the task becomes daunting I find myself delaying another day, which causes the pile to grow and so on.  I realized we were running out of clean scarves and I had to get things washed to replenish the supply. 

Maggie always wears a scarf around her neck over the trach tube and it is not unusual for her to through eight or ten scarves a day. Maggie has am impressive collection of scarves. They are in all colors and designs, many because people reading this sent them to her. We probably have fifty or sixty of them and use every single one. When the supply is running down, there's no more procrastination, I have to get on it.


Yesterday I devoted the day to getting caught up. There were at least seven loads down there and at least five of those were Maggie's. I folded things and put things away all day. The last of it was done last night while Steve and I were watching television. Folding laundry is mindless but necessary. Television is often mindless but entertaining. It's good to combine the two things

Steve was folding the last of the dozens of Maggie's scarves we washed yesterday. As I went to put the last of them away, I realized folding laundry may not be QUITE as mindless for Steve as it is for me. He didn't say anything, but left this for me to discover. He folded all the scarves normally - except one. The scarf in the American Flag design was afforded proper respect and folded like a flag. I could not help but laugh.

I have to wish my comedian husband a very Happy Birthday today. 

Daddy's Little Girl

Every evening after the nurse goes home, Maggie and Steve hang out together. Generally the three of us are hanging out, but I'm doing dishes or across the room and it becomes more of a Maggie and Steve show. Maggie loves this time with her dad.

Either she is using her talker to ask him to read or she is just "talking" to him. Eventually she gets restless and he asks if she wants to get out of her chair and sit with him. that is always met with an enthusiastic YES. Within 5 minutes of being in the big chair with him she is sound asleep. She generally stays there until the night nurse comes in for her shift.  Maggie would not sleep if we put her in bed, but sitting with dad is quite relaxing. Steve doesn't seem to mind, so the two of them are pleased as punch.

Last night Steve was reading Harry Potte to Maggie. I was watching the news. I directed Steve's attention to the TV because there was a story I knew would interest him. He stood up to see the tv better. Maggie was dumbfounded. This was interfering with her "dad"time. She started working on her dynavox and came up with this sentence. ---->---->--->
If you can't read it it says " Dad I want to read dad dad sit in chair dad"

In other words, "Hey Buddy get back over here and read to me!

Steve cracked up and did her bidding. Maggie was quite proud of herself.

 After a while she started to fidget and he asked if she wanted to get in the big chair. Yes! She was just waiting for an offer. She was out cold  in about 2 minutes and stayed that way until the night nurse showed up. It is not only a relaxed position for Maggie, but it can be very relaxing to hold Maggie when she's asleep. When she's awake it's very difficult because she moves so much, but all that settles down when she's really out. You can feel your own body settle down with her as you no longer have to shift to keep from dropping her. And it's not unusual to see this:

This picture is not from last night, I believe I took if last week. Its the two of them sound asleep both holding the tv remote. They didn't even move when the camera flash went off. 

And just so you know, Maggie's shirt says "Don't mess with Texas", which is one of her favorite sayings. We're not sure why.

Gray Skies are Gonna Clear up, Put on a Happy Face

There is a strange yellow ball in the sky surrounded by pale blue sky. Hallelujah! Maggie's summer vacation started 10 days ago and this is the first sun we've seen.  It's 7:30 AM, we are getting OUT OF THIS HOUSE in the next 30 minutes. (We have to I have to move the car by 8:00 for street cleaning day.)

One learns to take advantage of days like these. They are far too infrequent. Summer weather in San Francisco is generally about 10 days in June and then again for a couple of weeks at the end of September/beginning of October. This rain cut into the front end. The dreariness really wears on one, especially when you know the summer fog is just a couple of weeks away. It also puts a major crimp in our outings.

 We did manage a walk in the park Sunday but kept one eye on the gathering black clouds and didn't stray too far. On Saturday there was a deluge and Steve was busily rigging up a giant umbrella over Maggie's chair.

 I watched for a while but finally stopped him. I said "this child has not been able to keep her oxygen numbers up for  a month, perhaps a walk in the pouring rain is unwise." Steve just looked at Maggie and said, "I hate it when she's right".  We' drove to the museum at the Legion of Honor instead.

Yesterday Maggie and I went to the California Academy of Sciences which houses the aquarium and multiple other attractions. We can walk there in about 10 minutes, but once again it was raining. We went in the car and parked about 100 yards away. We went inside to find that every single child in San Francisco under the age of 7 was there. Holey Moley it was crowded and extremely loud.  We stayed for a while kind of humoring the situation and one another. Maggie used her talker say "Mom. I want to go. Mom I go to car." That was all I needed to hear - we went for a ride instead.

We did reconnaissance for today's outing, checking out possible parking spots for our outing. There were rumors that the rain was going to end and we are bound and determined to get some sun and fresh air.
We are headed down to the Embarcadero for a walk along the Bay.

If only I had more faith in the nice weather rumors, I would have purchased these glasses Maggie tried on at the Academy of Sciences.

Yes, No, Maybe so

It's been a roller coaster day. I was scheduled to be on a parent panel at UCSF today. This was a retreat for nurses. You must know by now that nurses are among my favorite people on earth. Generally I love doing these things and demonstrate our glass half full approach. That was harder today.

About 5 minutes before it started I received a phone call from Josephine one of my home nurses. She hurt her back and had to cancel her three shifts this weekend. THIS weekend. The weekend Steve and I were planning to go away to celebrate our 25th wedding anniversary. I have been setting this up for weeks getting nurses lined up and supplies stored, renting a place for us, packing, preparing etc etc etc. Steve and I have been away alone together twice in the 17years since Maggie was born. It's a big deal and it looked like it was all going to fall apart. 

I went in to the panel with my heart in my mouth wondering how I could possibly piece things together at the last minute. Ironically I was in front of a room with 60 nurses in it trying to figure out where I could find a nurse. Of course nurses are not fungible,  I had to find nurses that know Maggie, know my house  and can work on their own because I wasn't going to be here to help.

We went through the presentation and it was well received, but I was not my jolly self at all, and I feel bad about that.  I'm very glad I prepared some stuff ahead of time because I was very distracted and feeling very sorry for myself.  As the other two presenters answered question I began to formulate a plan of attack. My brain was like def con 3 - I started mentally moving things around and finding ways the puzzle could fall into place. 

The first two efforts failed and I felt more dejected, but refused to give up. About an hour ago the puzzle came together. Fely will take Saturday afternoon and Tim will be here to help Fely, who can not do things on her own. Etoy will take Paulo's night shift and Paulo will cover Friday afternoon and stay a little longer on Sunday after his 7-3 shift on Sunday. We will have to be home by 5PM on Sunday, because there won't be a nurse after that, but that is completely doable.

I wonder if I can get a do over on the presentation. I'm feeling much calmer now.

We are off on our getaway. Keep your fingers crossed that nothing else goes wrong. I'll report back next week. 

Small Things

Steve and I stole away on Friday night for a quick bite. We don't go out very often and we always have a great time. I really needed to get out of this house but didn't have the drive to come up with any thing. I jumped at Steve's suggestion that we go out to dinner.

We went to a little Mexican place we like. It's always crowded and very ALIVE. Every inch of that small restaurant is decorated with brightly colored paint, pictures or other things. You can't stay down in the dumps for long if you eat there. Here's Steve posing by the beers and you can see some of the decor in the background.

In addition to the decorations on the walls, every chair has a name painted on the back. The names are random, there will be Jordan or Ann next to a Julio or Mike. It's just another part of the energy of the place.

I signed in for us and we waited about 20 minutes for a table, wandering into a nearby bookstore for a few minutes. We came back just a minute before they guy said "Sally, for 2" I said "right here." He held out my chair and I had to point this out to him (see picture). He smiled and said I'd love to tell you that was on purpose, but we are a little busy to match the chairs with the customers.

My phone rang during dinner. I always keep it on the table in case the nurse calls about Maggie. It wasn't the nurse, but a number I didn't recognize. I don't know why I answered it, but I did. The woman on the other end said "Sally?" I (checked the chair and) said YES?
This is Anna Romo.

Anna Romo is the lady who was so nice to Maggie and gave her the bread the other day. (see two posts from earlier this week) She received Maggie's thank you note and the note I enclosed with a copy of the post and a business type card.

I motioned to Steve and ran outside where I could hear her and she very sweetly thanked me for the note and told me how Maggie is a blessing in our life.  She invited us to visit her at Boudin Bakery again, and I promised to do so.

I came back to the table and told my confused husband that it was Anna Romo. (It was Steve's idea that Maggie write the note). I said, she got Maggie's note and was very happy about it. We smiled at each other and Steve said simply "Small Things."

What he meant by that was what a difference small things makes in someones life. Anna showed a small kindness to Maggie, Maggie sent a small note of thanks,  Anna made a phone call to thank us for that and to invite us to visit again. Three small things that add up to a lot.  And my chair had my name on it!

Everyone feels good. Everyone wins.

Remember the small things. They really do matter.

 

Can you handle THIS?

 What a weekend. We had Eddie visiting for one night, we were invaded by a raccoon, we watched the Giants clinch the West, and we celebrated Steve’s birthday.  None of those things was the highlight for Maggie, though. Rather, a little home improvement project caught her fancy.  

After 20 years of plain wood in the kitchen, Steve put drawer pulls and handles on the kitchen drawers and cabinets. My friend Grace said it’s like putting on the perfect necklace with a dress. It just completes the look. In our case, there is an additional bonus. A certain teenager in this house thinks these handles are GREAT! The drawer pulls are at exactly the right height for the wheelchair.

Maggie could not get enough of these wondrous things yesterday morning when we were making Steve’s birthday cake. She got a hold of the drawers and had a great time opening and closing the drawers. She was tossing dishtowels around the kitchen with great abandon. Late in the afternoon her nurse brought me a key she found in Maggie’s chair. Oops. I tried to keep her out of that drawer but I was obviously unsuccessful.  

Maggie was enjoying herself tremendously when her brother Eddie came up behind her, leaned over and said in his deepest possible voice “Maggie, what do you think you are doing.”  She found that delightful.

Having her brother here, even if only for a couple of hours, was almost as good as having the new drawer pulls. Maggie comes to life even more when either of the boys come home. She will have to wait until Christmas to see Eddie again. We will have to work on getting Tim to come home and give her a brother fix. Forget raccoons and baseball and birthdays. She can show him the new handles.  

Happy Birthday Dad!

Maggie made Steve a birthday card for his birthday today. She made it at school on Friday. The teacher told her to "write" what she wanted to say to her dad. She simply used her talker and everything that went into the speaking panel  was  transferred to the computer. I didn't even know that was possible, but I freely admit I know only about 25% of that machine's capabilities. (that includes things I KNOW about but cannot make work)
Maggie "wrote" for several minutes. When she was done the teacher printed the message and put in inside the card. I laughed my head off when I saw this

.Remember it's phonetic. I starts out "why I ought a..." You can see how she starts losing interest in dad toward the bottom and talks about her friends Juan, and Cui Peng,  her nurse and her teacher.

Steve loves it, of course. 

The Gift of Time

We are readjusting to the school schedule. That means we are back to the morning rush of getting Miss Maggie ready and out the door in time for the bus at 7:15. That is no small feat. By the time the bus pulls away, I am ready for a few minutes of down time. It is this time that I tend to read the paper (yes we still get the paper) check facebook, write, read blogs etc.

It is important to be aware of the time slipping by, however, because there is a lot to be done before that afternoon bus arrives with Maggie. There is a nurse here in the afternoon to tend to Maggie, but I have to be around to help. I can run out for a few minutes here or there, but I am on a very short leash once Maggie is home.  If I was an intelligent being, I would hit the ground running in the morning and play on the computer after 3PM, but I guess that involves too much of a change in my schedule.   

I do have actual work to do for the clients I handle. There is also the ridiculous amount of paperwork and “busywork” involved in managing Maggie’s supplies, services, nursing, life etc. Every week there is some appointment or other for Maggie, which all requires choreography as well as execution.  On top of that are the obligations that everyone has shopping, laundry, walking dog etc.  Tasks that can be done with frequent interruption I save for the afternoon.  Things that need my full attention have to happen while Maggie is gone.

Yesterday I finished something I was working on at 2:00PM. Maggie’s nurse arrives at 2:30 and her bus comes at 3:00. I needed to help my mom with something but I did not have time to get over then and back before Maggie arrived. I called and told her I would be there at 4:00PM after Maggie was settled in and the first set of procedures was done. I still had to do the shopping too. We had a friend coming for dinner so I needed to get to the store.  I knew I could do that in an hour.  I went to Safeway which is just a few blocks away. I was coming home  when I  saw a school bus. I looked at the clock  which read 2:42 and thought, that can’t be Maggie, it’s 15 minutes early. As we passed each other I tried to catch a glimpse to see if it was Maggie’s driver. I couldn’t see him but was sure it wasn’t. As I turned the corner onto my street I see Janice, the school nurse pulling out. That means Maggie was home AAACK!  She was early.  That really did not compute.

Janice stopped to give me a report on Maggie’s day. She had already spoken to Fely, the home nurse, but Maggie has been less than perky this week, so she wanted to talk to me too. She told me Fely asked “where’s mom.”  It was unthinkable that I wouldn’t be there to meet the bus. I’ve never done it without telling someone ahead of time. I lugged the groceries in and greeted the Queen and her attendant. We set about getting the procedures done. 

As I was getting ready to go to my moms, Steve called. I told him I had to dash and he said those words every busy person wants to hear. “I’m about six blocks from your mom’s house, why don’t I go fix it?” That was the gift of time. I had an hour to myself. The shopping was done. Dinner was easy and didn’t need to be started yet. I had an hour to waste if I wanted to.

I plopped in a chair and watched “Make over my Man” day on Oprah. It was decadent. And I got a few good ideas for Steve and the boys. 

Soup Kitchen

I arrived home from dinner Thursday night around 8:30. Steve was in the kitchen making a giant pot of kale soup.When we turned in around 11:30 the soup was still cooking. He just turned it off and left it to cool over night and dealt with it Friday morning.

Brisco the wonder dog was watching him intently as he put the soup into containers just in case a piece of meat should fall on the floor. I was sitting at my computer and could see the dog staring. I could not see Steve, but I could hear him.

I  busted up when I heard Steve say to the dog: 'NO SOUP FOR YOU!" in his best soup nazi voice.

Brisco didn't think it was as funny as I did.

If you've never seen Seinfeld's soup nazi episode, this will mean nothing to you.

Gotta Fly!

While Maggie is at school, I have time to myself. This is the only time I can really get things done. Lately, for some reason, I seem to spend the morning working around the house g and then spend the last hour or so of my freedom RUSHING to get other things done before Maggie’s bus arrives at 1:30 PM. It really is astounding how much you can accomplish in an hour when you have to. It would be far more relaxing to do things the other way around, but it has become something of a game with me.


This morning I actually got a fair amount of work done. I just resolved a matter for a client and all the final paperwork had to be copied and delivered. In addition, Maggie’s recently repaired dynavox was not actually repaired and that had to be prepared for shipping back for another round. I sent faxes and prepared packages and by the time I came up for air it was after noon. From 12:15PM to 1:20 PM I was able to get to the UPS store to ship the dynavox, go to the post office to priority mail some documents and hit the bank. Unbelievably, there was no line in any of the three places and I had time to spare. A quick trip to Safeway and I was home with five minutes to spare. May be a new record.

Maggie has a nurse with her in the afternoon, but the nurse cannot do things alone and I need to be here to help her with procedures. I could let her meet the bus alone and I have done so when necessary, but I like to be here for Maggie when she gets home. Besides, once the 3PM procedures are done today,I am out of here. I am leaving at 4PM and Maggie and the nurse are on their own until Steve arrives at 6. I am going out on the town.

I am going to see Peter Pan, which is playing in a giant tent on the Embarcadero. From what I hear, it’s a spectacular show with the actors flying above the audience. (Check it out here http://peterpantheshow.com/ ) Our friends Malcolm and Lindsay have ONE extra ticket. Malcolm,, who works with Steve, went into Steve’s office and said, “you have to watch Maggie next Thursday night because we are taking Sally to Peter Pan.” Steve happily agreed and he will play backup caregiver so I can go out. He will be on his own when the nurse leaves at nine, but he can handle it.

Right now its 1:45. I still have to do a bit more legal work, shower, dress, help Maggie, walk the dog, and do a ton of other things. I’m starting on those things now. I don’t want to play the last minute game tonight. I want to be in that seat when the show starts. I am hoping to be able to learn how to fly. It will save me so much time!

Team Justin

Both Maggie and I meet numerous people during our hospital stays. It is not unusual for us to know two or three other patients when Maggie is admitted. There are a number of “frequent flyers” (regular patients) at UCSF Children’s Hospital, and both parents and kids get to know each other.


On Saturday we went to Crissy Field to support one of those kids. Justin is 14 and has Cystic Fibrosis (CF) which is a crappy disease. He has to spend long stretches in the hospital but he makes the most of it. He is well known for the Wii competitions held in his room. Unless you saw him in the hospital though, you would NEVER know this kid has anything going on. He is an active 14 year old that has a ton of fun.

On Saturday, the “Great Strides” walk to benefit Cystic Fibrosis research was taking place at Crissy Field. This disease should be cured. Researchers are making "great strides” toward a cure and Justin’s family is very active in raising money for research. They recruited many walkers to participate and were having a barbecue afterward. It was a fantastic day, so Maggie and I headed down there. Dad was going to join us a bit later after giving his sister and her friends a whirlwind tour of San Francisco.

There were a gazillion people at Crissy Field. I looked around for “Team Justin,” pushing Maggie through the various awnings and parties set up for other walkers. There was a huge group or fraternity boys and sorority girls in one group. Just as I pushed Maggie through their group, the pizzas arrived and we were completely surrounded by frat boys. Note to self – never get between fraternity boys and free pizza. They quickly parted ways so we could pass, but it was a funny few minutes.

I found Team Justin when I saw a nurse from the UCSF PICU. She recognized Maggie and came to retrieve us. There were burgers, hot dogs grilling, and walkers returning for the feast. I spoke briefly with Tina, Justin’s mom (who serves on the Family Advisory Council with me and other parents). I caught up with Chriss, the nurse manager whose kids went to school with mine.

As I chatted, I started to suction Maggie and found the suction machine would not suck. Really? The machine has one function. I could not get it to work. I called to see if Steve was home and could grab the other, but he was still touring. We had to leave. Maggie was doing ok, but I had maybe 10 minutes to get to a working suction machine, which is just about how long it would take to get home. .

I said my goodbyes. Rob, Justin’s dad said,” Aren’t you going to eat.” I told him I couldn’t. I used to (jokingly) say that everything in my life sucked except my vacuum, so I quickly reformed that saying to fit the situation and took off.

We did get a picture of Justin and Maggie, though. Justin is holding his friends dog “Starbucks”

If you want to participate in the Great Strides Event on your area or get involved in the fight against Cystic Fibrosis, check out http://www.cff.org/great_strides/ 

Unrelated but important note: Today is my 24th wedding anniversary. I am a very lucky woman because I met and married the right person for me. As I waited for Maggie’s bus this morning at 7:00AM, chatting with the night nurse who was leaving and the school nurse who was arriving and trying to get the dog to stop barking I thought “who would have thought this would be my life 24 years later” And then I smiled. Better, worse, richer, poorer, sickness, health. We have had ‘em all. Happy Anniversary, dear.

Hey another Saturday night....

Another wild Saturday night at our house. This was taken about 10:30 PM. Note the pile of books at the foot of the chair. Maggie loves it when Steve reads to her. The books wear the two of them out. The omnipresent suction machine is also visible.